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pregnant-have abscess, fistula and seton-please help me!!!!

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Posted 5/11/2015 4:14 AM (GMT 0)
Hello,

I'm new here. I've read many posts but never found anything that comforted me, only posts that made me question my issues more. So I'm hoping someone will take the time to read my post and offer some advice because I am going crazy here.

Background: I've never been diagnosed with Chron's, IBS or UC. I have had bowel issues in the past-constipation at times and diarrhea at times-nothing with any pattern. I have what I think is a mild lactose intolerance and feel bloated and gasy often. Since being pregnant (31wks currently), I have been constipated-but have bowel movements every day-which is normal for me.

In Feb I started feeling pressure to my left labia and pain to the left side of my pelvic floor-I thought it was due to changes from my pregnancy. This got worse- had difficulty sitting, standing or walking and one day after having a bowel movement, I was in severe pain and noticed blood from my vagina-not rectal. I thought I was miscarrying and rushed to the hospital-they checked the baby-he was fine, checked my vagina-said there might have been a cyst but it probably drained its self. I was still sore on the left side but they couldn't visually see anything. Got sent home with pain meds until my OB could see me in a few days.

My OB sent be back to the hospital because the pain and swelling had spread to the right side within 2 days. Got admitted to the hospital after a ultrasound showed that I had an Ishorectal Abscess. I had a spinal block and had both side drained. I had packing done daily and the wounds were healing very well. 3 wks into recovery I started noticing that the scar tissue on the left incision started oozing pus and the pain and swelling had returned. I called my surgeon and he said to wait and see, as I was not in severe pain. Well by that evening after taking an epsom salt sitz bath, I saw-using a mirror-the abscess on the left side of my vagina. By the time I got to the hospital it had already started draining. They gave me antibiotics and sent me home saying that its a Bartholin's Cyst.

My OB sent my back to the hospital when I saw her. Ended up having a second spinal block, drainage and a seton in place. This time around I was lucky at the surgeon on call was a colorectal surgeon. Within 2 wks after the surgery the pain came back-my scar tissue from the first surgery on the left side burst open and started draining pus. I had an apt with my colorectal surgeon and she said there isnt enough to drain this time and they'll just watch and see what happens. I also keep telling them that there is a fistula to my vagina but no one believes me. The seton is still in place on right side and it still drains on its own but I get more drainage when I press around it. I still have pain on the right side around the seton and mininal pain on the left side.

I do not wish to do an MRI as I am pregnant, really do not want an exploratory surgery because I am pregnant and already had 2 surgeries this pregnancy, cannot get diagnosed with any of the bowel diseases because I am pregnant and cannot take any antibiotics because I'm pregnant.

I feel so ALONE and feel like I will never be able to overcome this disease. I can no longer have a vaginal birth due to the two surgeries and the seton that is in place. I just feel like I will forever be stuck this way. I want to do whats best for my baby but don't know if I could live like this anymore. I have been on sick leave since Feb and will not be going back to work as now I am considered high risk. My husband is amazing and I wouldn't know what I'd do without him, but I feel isolated as I am alone all day and cannot do many activities.

I need advice and some positive stories from people who have had abscesses, fistulas, setons and have recovered from this ordeal. I need a light at the end of this tunnel. I am having a C-section 2 wks before my due date so that we can try to prevent some complications. The plan is to have an MRI after I give birth to see exactly whats going on with me.
Posted 5/11/2015 1:25 PM (GMT 0)
It sounds like your care has been reasonable and that your forward plan is also reasonable. Being pregnant makes all of this very challenging, but your pregnancy will end in just a few weeks and then you can move through diagnostics.

I assume from your post that you never saw a specialist (GI) prior to this pregnancy and that your bowel issues were never significant enough to warrant any colonoscopy or anything else. Pregnancy triggered my IBD, and many others here have had similar experiences. I don't know if that's comforting, but you should know that you are not alone.
Posted 5/11/2015 1:36 PM (GMT 0)
That is so scary. I am very sorry for what you are going through. I have had abscesses and currently have a RV fistula. I am pregnant with our second child. Why do you think that you have a RV fistula in addition to everything you have going on? I would suggest with everything that a c-section might be a good idea instead of all of the pressure from vaginal birth and pushing. If you have an abscess or cyst that keeps re-forming, then pressure could cause it to burst on the inside and make the infection go into your bloodstream. I am NOT saying that would happen without a c-section, but it might be something to discuss with your OB.
Posted 5/11/2015 2:13 PM (GMT 0)
Kazbern- you're corrrect. My bowel issues have never been significant enough to seek medical attention. But I have always been fixated on having daily bms. I would never force myself but my body wouldn't feel good unless I went. This was my daily routine. Even now I go once or twice a day but need to take stool softners because I have to take iron pills. I just don't want things to get worse because the abscess is just getting drained and not receiving any meds to complement my treatment. I have also read that pregnancy can trigger bowel issues which is making me panic.

Scifigal2k- I don't think I have an rv fistula but there is a fistula there on the left side connecting to my previous abscess. I didn't know what else to call it. At least that's what I can tell. I don't have any feces coming out of it. But if I press on my left old incision I do see small pus like discharge coming out of left side. the colorectal surgeon says it's hard to tell because everything is so close in proximity. As for the c-section it has reduced my anxiety. Apparently I also have a muscle defect and am at high risk for an rv fistula post birth, so vaginal will never be an option for me which I am fine with. I'm just lost. I have no one to relate to and without having an underlying diagnosis it's difficult to seek support. This is the only forum I've found that discusses fistulas and abscesses.
Posted 5/11/2015 3:02 PM (GMT 0)
You're in the right place. I'm glad you're not panicked about the C-section. There's so much pressure on pregnant moms to have "the perfect birth" and you don't need that!

I'm glad your care providers are not loading you up with antibiotics and steroids, although you might need one or both in the coming weeks. From what you describe you've got the right care team in place.

I had plenty of bowel complaints in my young adulthood but never sought medical attention for them. After the birth of my first child I had rectal bleeding that I ignored for a few months, not sure whether it was part of the post partum bleeding for a while, then not ready to deal with it. I know in that pregnancy I became instantly lactose intolerant and also that I had to do IV abx for group b strep - did the abx trigger my IBD or the pregnancy? I will never know. But I've had it since then and it's not going away.

I don't have fistulizing disease so I can't offer any advice there. Scifigal and others will be a good resource for you.
Posted 5/11/2015 7:14 PM (GMT 0)
Okay, that makes a bit more sense about the fistula. When I read "fistula to my vagina" my brain interpreted it as RV fistula. Keep doing sitz baths, several each day. I am glad you're not panicking about the c-section. I'm guessing this is your first? It really wasn't all that bad.

I know the wait for answers is so hard. But try not to stress too much - not only is that not good for the baby, but if it is IBD then stress makes things worse.

I would consult with your OB about a good diet to go on for now. Normally I recommend the BRAT diet (bananas, white rice, applesauce, and white toast) for a while and then slowly start adding food in one at a time to see what causes problems. But constipation is always a thing when you're pregnant and you need nutrients, so BRAT might not be the best right now. I don't know, honestly.

So just some comfort in the meantime: I currently have RV fistula that has been there for a little over three years now. It came from an abscess that was cut and drained but didn't heal on the inside all of the way. (I have had another abscess that burst and went septic, but thankfully all that has been healed up.) I had a seton in the fistula for about 2.5 years, including through a pregnancy, and never had problems with it. Now that area is kind of like a pierced ear; we took the seton out and it just kind of has stayed open. A bit of drainage is okay, but if starts getting a lot or get you a fever, that's when you start calling the dr ASAP.
Posted 5/11/2015 10:36 PM (GMT 0)
I have a perianal fistula and I just had a cs in November.
That was a scary thing to go through, but I recovered well and baby boy is fantastically healthy!
I had a Bartholin cyst rupture on me as a child.
It's in my top 5 of most painful things.
And so, over 10 years later, when I had my first perianal abscess, I didn't see it for the dangerous Crohns symptom that it was.
I went to a doctor at a university clinic and because of the abscess' location and my history of Bartholin problems, he wasn't sure if it was Crohns or a Bartholin.
He erred on the safe side and prescribed me antibiotics cipro and flagyl. Nasty stuff, but it worked and the abscess went away, only to return a year later and rupture, despite more cipro flagyl.
A lot of undiagnosed women get sick with Crohns during pregnancy, only making their pregnancies more difficult; women who have been diagnosed with Crohns and get pregnant often see a lessening of symptoms. I know I did!
I think it would help you to meet with a GI and establish a relationship with him/her, as well as a game plan for you postpartum.
MRIs are great, but they usually do them to assess the current state of a person already diagnosed with Crohns.
I hope that you take the time to really focus on your own health after your delivery and find out why all this has happened to you.
Just think about it this way.
If all tests prove that you DON'T have Crohns, you are more likely to find a surgical option and remove your fistula. But if you do have Crohns, you want to know, because surgeries can make fistulas spread and also increase the chances of incontinence. Plus, you'll be able to get on Remicade, which is the best drug for treating fistulas.
Good luck!
Posted 5/12/2015 2:52 AM (GMT 0)
Kazbern- yes! I can understand the pressure and it really is not fair to women. Luckily, I have an amazing husband and family who support me. Although, they do not fully understand whats going on, given that none of us has had any GI issues, its still nice to know they have my back.

I made a conscious decision to minimize my exposure to antibiotics and other meds. I met a doctor the last time I was admitted, she will be performing my C-section, who indicated that my bowel issues can be managed with meds while I’m pregnant and they would oversee everything. I opted out because my symptoms can be managed for the time being with the seton.

Thank you for sharing your story. It made me think of the fact that I was on Accutane therapy a year ago for severe acne-God only knows if that had any cause for this or if it’s the pregnancy itself.

Scifigal2k- I only do sitz bath once a day because I’m afraid of vaginal infection. I don’t want to add more to my current issue. Do you think its safe?

C-section doesn’t make me panic because both of the times that I had the abscesses drained it was in the OR with a spinal block. The recovery from the spinal block and the whole process was not as bad as I had anticipated. I know recovery from c-section will take more time, but luckily I will have a lot of help after birth. Yes, it is our first and we could not be happier. We got pregnant on the first try which was a surprise because I always thought I would have difficulty conceiving.

Ahhhh thanks for suggesting the diet! I have looked into natural diets but yes, being pregnant and constipation goes hand in hand. I will def try what you’ve suggested but perhaps after I give birth. This pregnancy is preventing me from doing everything I can to promote further healing or trying alternative therapy. But I still wouldn’t trade my little guy for anything in the world…not even a cure for this pesky disease.

Thank you for sharing your story, it is comforting to know that someone out there has experienced something similar to me and the fact that you had the seton in place while pregnant. I guess my concern is intimacy with seton. My husband and I have not been intimate this entire pregnancy. He is the most understanding and loving person, who completely supports me and knows how difficult it has been for me. But like any other hormonal pregnant woman, I feel bad that I cannot be intimate with him or fear that I will never be able to unless I get this whole thing “fixed”.

Gypsyfp-thank you for sharing your story. My exact plan is to get to the bottom of this-no pun intended. I need to know why this happened and what are the chances of it happening again. For my sanity, I need to know if I have any serious GI problems or if this stemmed from being constipated early on in pregnancy which could have caused a fissure or internal hemorrhoid.
Did your fistula heal completely? And what procedure did you have done or what meds were you on?
Posted 5/12/2015 4:21 AM (GMT 0)
My fistula will be 6 years old in August.
After I started remicade in 2010, it closed up for 6 months, but then reopened again.
I'm still on remicade, but it's not as strong as it once was.
I have seen a few surgeons, but all of them refuse to attempt any type of surgery because of my crohns and the type of fistula. They don't think any surgery would be effective.
Plus, I'm also unwilling to try surgery since my quality of life is pretty good right now.
I'm going in for another colonoscopy in early June just to see what is going on under the hood.
I can't be too careful.
My great grandfather died of colon cancer and my grandmother also had stage 4 colon cancer and a rectovaginal fistula, but is currently in remission.
For the longest time, I was unwilling to try any form of intimacy because of the fistula. It made me think that I was meant to be alone. I thought that I would never be able to have children.
I've since learned that the fistula is not as bad as I've made it out to be in my mind. I have a loving boyfriend, a healthy 6 month old, and decent energy.
It's truly amazing.
Posted 5/12/2015 4:37 AM (GMT 0)
I am not sure if a vaginal infection would occur with sitz baths. I never had that happen, and I did them a lot. I'd double-check with your OB about it. Sometimes I would even do six baths a day at the beginning to help it drain. If you are still worried about it, then wet washcloths warmed in the microwave (not too hot, don't burn yourself!) placed directly on the area can help draw out any infection or drainage.

I totally get the worry about intimacy. My first abscess/fistula happened about three months after I got married. My husband and I both waited until we were married to be intimate, so I was pretty traumatized about this and convinced he would regret marrying me. He rolled his eyes and told me I was ridiculous. He has been the most patient, understanding man through all of this. You said your husband has been pretty great, which is so good.

I know you don't have Crohn's, but this helps describe it: Crohn's is not a sexy disease. My husband has had to pack abscesses for me, clean up after me if I have an accident in the car because I'm flaring and we're stuck in traffic, and many other horrifically embarrassing moments. With the seton, I was worried about it, too. I think it's normal to feel nervous about it hurting, embarrassed that it might be gross or a turn off, etc. It's hard to feel sexy with this think that leaks pus hanging out of you! I would say the biggest things are open communication and being willing to try. Push past your insecurities and worries and fears. If it hurts, don't be afraid to say something. It may kill the mood the first few times, but being open and honest will make it easier in the future. If you don't say when it hurts or something feels off or wrong, then it will make you start to resent intimacy and your poor husband will be clueless! But make sure that he needs to understand to be slow, be patient. Not treat you like you're broken or gross. If either one of you needs to vent to someone else or just discuss with someone else, that is okay. My husband and I agreed, in advance, on a friend for each of us that we felt comfortable with the other discussing the situation. For example, he didn't want me to talk to my mom about much because it made him feel awkward. But he had no problem if I spoke to my best friend. Does that make sense?

I had the seton in for two years. It was awkward at first as we figured out the most comfortable angle, things that did or didn't work, etc. But being open and honest is what helped us get past that and be able to smooth things over. Be willing to try, but also let him know he has to be okay if it takes you some time to adjust. But I promise it will get better. We definitely weren't celibate those two years! ;) It just takes some adjusting from the way you used to do things. Think of it like a broken arm: if you had a cast on, you wouldn't lay certain ways, etc. so that his weight wouldn't be on it or something. It's the same idea! Just adjust to what physically you can still do and find new ways to do things.
Posted 5/13/2015 2:37 AM (GMT 0)
Gypsyfp- I give you huge credit for dealing with so much for so long. I’ve only had this issue since Feb 2015 and cannot wrap my head around it. Maybe because so much of my issue is still unknown as I cannot do all the diagnostic testing. I think you have the right attitude and doing the right thing, as this is not affecting your quality of life. I don’t know yet how mine will be because so much of my discomfort is also from the pregnancy and the pressure from my big belly!
Your family history made me think about my own and from what I know; I have no such history in mine. The only thing I can think of is chronic constipation that my mom experiences but she is also anemic and takes a lot of iron meds.
I’m currently at the point where I am not ready to be intimate. Luckily my husband has been amazing and very understanding. I know my situation can be a lot worse, but until I can come to a term with everything that is going on, it’ll be difficult to address my intimacy issues.
Scifigal2k- I waited all day to respond to this post because I had my appointment with my CR surgeon today. My seton is draining well and no accumulation on the left side. I’ve asked her about sitz bath and she recommended that I do at least 2-3 per day and no concerns about vaginal infections. I will def try the warm/wet washcloth you suggested.
My concern now is that since the very first surgery with the chief of general surgery, he recommended that I go to a fistula guru in another hospital. The second surgery was done by a CR surgeon at the same hospital who happened to be on call that night….so it was a fluke. She is now the current doctor following me. She was trained by this fistula guru and actually called him during my second surgery to get advice on placing the seton. So im confused! I don’t know if I should stay with her or go to this fistula guru. It might take longer to get an appointment with him but he is the best of the best and even my current CR surgeon said she wouldn’t be offended if I wanted to go to him. This also means that this whole ordeal may get dragged on for longer than I would have hoped as this fistula guru is very busy. But have also been reassured by my current CR surgeon that people live with setons for years (like you mentioned) with no complications and interference with their life.
Thank you for sharing your intimacy story. It really does give me hope. I’m not in a good place with whats going on with me as yet and am definitely not ready to be intimate; however, when I do get to that point, I will def take your advice and have a conversation and communicate openly with my husband.
I am so glad I have joined this forum. Just being able to communicate with people who have experienced similar issues makes a world of a difference. So, thank you!!!!!!!!!!!!
Posted 5/13/2015 2:44 AM (GMT 0)
I'm glad you have found this forum, too. It definitely helps you not to feel so alone or lost or confused. I get not being ready for intimacy right now. If you're not already, though, you might discuss experimenting a bit with being close physically without penetration (sorry, not trying to get super elaborate on the forum!). I wouldn't be the best person to know much about the "how" of doing that, but that way your husband doesn't feel abandoned or alone. It's hard for him, too. Not just the no intimacy part, but feeling stressed and helpless because he can't really do anything (at least, that's how my husband felt).

Hmmm, good question. I would give this guru's office a call and ask about an appointment. If we're talking months to wait, it might not be worth it. Since your current CR surgeon knows him personally and wouldn't be offended if you left, maybe should could call his office and get you in sooner. The fact that she called him during surgery to get input is a HUGE plus for her. I would much rather have a doctor admit they need help with something than to just try to bluster through and pretend they know everything.
Posted 5/13/2015 3:15 AM (GMT 0)
scifigal2k- ahaha I understand what you mean. There are other ways of being intimate without penetration. My mind has been so cloudy with everything that is going on that his needs have been on the back burner. I will def have to pay more attention to that aspect of my marriage. You're so right! he does feel helpless and he always says he doesn't know what he can do to make it better for me. He is truly my rock and has been calm throughout this whole ordeal and never lets me see him stressed, but I know he is. I honestly, am so lucky to have him and could not imagine going through this alone.

My current CR surgeon wont refer me to the fistula guru because he'll tell her she can handle it and doesn't need his help because its not an issue at this point that would require his expertise. But she understands and supports me if I wish to go to him. So if I do, I'll have to go through my family doctor. I made a pro and cons list:

Fistula guru:
Pro- best of the best. chief of surgery and two other doctors have mentioned him and recommended a referral to him.
-post c-section i'll get longer time to recover and breastfeed my baby as the appointment could take a long time.

con- it may take months to get appointment-i'll call his office and confirm wait times.
-different hospital, different staff and new doctor who doesn't yet know my history.
-MRI and other diagnostic tests can also take month/weeks to organize.

current CR surgeon:
pro-already knows my case. Giving me control over my treatment and timeline-meaning she'll do the surgery when I'm ready after having the baby.
-same hospital as last two surgeries.
-she's willing to keep me as her patient and see me in her clinic any time I feel I have a concern.
-will be able to get all diagnostic testing faster as she doesnt have to wait to do my initial assessment to determine what to test me for.
-has the connection with the fistula guru and will consult him again if need be

con-she mainly deals with CR cancer patients.
-fistulas/abscesses are not her primary area of expertise
-if the next procedure/surgery doesnt work and she refers me to the fistula guru-i'm back to square one and will fall behind in treatment.

ohhh the decisions! luckily, none of this is happening until I give birth. But if I do go with the fistula guru, I have to act fast and get my name on his wait list.
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